The Extreme and the Ordinary (#203)

A “widely misunderstood extreme neurological disorder”: That is how Asperger’s is billed on Dr. Phil, which is airing a segment on this “high-functioning form of autism which causes a person to lack control over his or her emotions, including anger” along with Tourette’s Syndrome on January 17th. Alex, the 15-year-old diagnosed with this “extreme disorder” is said to have such fits of rage that his parents don’t know if they should “be afraid of Alex, or is there something they can do to bring his behavior under control?”

It is true, Charlie can get very angry over seemingly little things, like being asked to move a placemat. Referring to Asperger’s and other autism spectrum disorders as “extreme” makes me wonder if our family life seems like a daily X-Games extravaganza. Thrown dishes! Holes kicked in the drywall! Caterwaul screeches! Blue glove thrown out the window!

The reality of life in Autismland is a lot more mundane, if not a bit boring.

As in: Charlie ran eagerly over the ice onto the school bus, worked hard thanks to his teacher keeping him tightly structured, ran off the bus, ran up the stairs to do ABA, pushed the cart and got items off the shelves as I requested, carried up cardboard for recycling from the basement, asked to hear his latest favorite song “In nee Ee-feh-een” a couple of times, curled up in bed at 9.30pm.

But there’s something about living in Autismland–raising a child with a cognitive disability–that makes the ordinary shine and become purest gold.

Dr. Phil’s referring to Asperger’s as an “extreme neurological disorder” reminds me of Bruno Bettelheim’s 1943 article “Individual and Mass Behavior in Extreme Situations,” in which he describes the psychology of concentration camp prisoners. Bettelheim was a survivor of the camps in Buchenwald and Dachau; his 1943 article “shocked a world that knew little about the camps and was not likely to question Bettelheim’s methods, theories, or conclusions,” as Molly Finn writes in a review of the 1998 Robert Pollack biography of one of the main proponents of the “refrigerator mother” theory of autism in First Things.) In The Empty Fortress: Infantile autism and the birth of the self (1967), Bettelheim theorized that autistic children had withdrawn and felt “the death of all hope” due to being in an extreme situation–namely, their “cold” mother’s “anger or injured indifference.”

And extremely misleading, if not downright wrong about what our daily lives with our autistic children are like. Afraid of Charlie: What kind of a silly and absurd notion is that to say of my sweetheart boy who passed a lollipop back and forth with his dad at a basketball game yesterday? Dr. Phil, we here in Autismland are extremely annoyed (if not angry) at you for promulgating false stereotypes of children on the autism spectrum. It is an affront to our children’s dignity. You are spreading the kind of misinformation about autism that is on a par with the very wrong theories of Dr. Bruno Bettelheim.

Because autism parents today know that we can reach out to each other–via email, phone, IM, blog–and share our daily stories and tears and fears.

And laughs. As the New York Times quotes Edward Einhorn, the artistic director of the Untitled Theater Company No. 61, who describes NEUROfest, a festival of a dozen plays devoted to Creutzfeldt-Jakob, Tourette’s syndrome, autism and other neurological disorders: “‘In a way, [the neurological disorders] weren’t all that far out there….I could really see how [they] related to me.’ If that seems extreme,” the Times article further quotes Mr. Einhorn as saying “‘We are all, in some way or another, doomed – doomed to be sick, doomed to die, doomed to have problems…….you can’t help but see the comic side of it.'”

NEUROfest is presenting a short play on autism/Asperger’s, “The Boy Who Wanted To Be a Robot” on January 18th, 6.30pm in NYC, followed by a seminar on autism on which I am a participant. It goes without saying that I am extremely proud to be asked to be part of this event, to spread the word about our children and autism and our lives.

And that I am extremely proud of Charlie.

But you didn’t need a Dr. P. or a Dr. B or even a Dr. C to figure that out.

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Comments

yes! of course you are extremely proud of charlie! i am too! i find it infuriating that at this point there isn’t more ACCURATE information being put out to the public about what this disorder is and what it is NOT. dr. phil, shame on you. geez. but what am i saying? he’s not even a DOCTOR. so i guess we can’t expect him to care much about accuracy. asperger’s isn’t an emotional disorder or an anger disorder. some people with asperger’s may get very angry at times; that’s true of anyone. look at the underlying reason, dr. phil, look at what challenges may cause this. also, look at the fact that 100 people with asperger’s are going to look 100 different ways. ugh. glad you’re participating in that seminar so you can spread some truth. go kristina!

Damn! I had that Dr. P show recorded on my DVR and erased it before seeing it to make way for the History Channel’s show on Lincoln’s depression. Would have loved to have seen his riff on this. . . w/ his usual mixture of pity, amazement, and thinly veiled contempt.

Anger is not a word I would use ever to describe Andrew. I hate that word “extreme” too. Maybe a better word than anger is “frustration” because that is how I believe most kids with Asperger’s feel when trying to understand some of the crazy things NT’s do.

I don’t know about you, Kristina, but I was sorely disappointed (and disgusted) at the Asperger’s segment. What an obtuse view of the syndrome. In fact, it wasn’t much of a view at all. We just saw a lot of Alex’s rage. If I had parents yelling at me at the top of my lungs, I (an NT) would be slamming doors, too.

Dr. Phil sadly missed his chance to educate the public on something really profound.